Life With Lupus
Your body has its own system for fighting off sickness called the immune system, but sometimes it doesn’t work correctly. When this happens, a person may have an autoimmune (say: aw-toe-ih-MYOON) disease. Lupus (say: LOO-pus) is one of those diseases.
A healthy immune system is like an army that can protect you against germs and illness. It makes antibodies (say: AN-tih-bah-deez), which are special chemicals that fight off infections. But with a disease like lupus, the army gets confused and begins attacking the healthy cells in your body. It does this by making autoantibodies (say: aw-toe-AN-tih-bah-deez), which are antibodies that attack the body’s normal cells.
People with lupus may not look sick, but they may feel run down, weak, or nauseated. Their joints may hurt and they may have swollen glands.
There are three types of lupus:
- Systemic lupus erythematosus (say: sis-TEM-ik LOO-pus er-uh-thee-muh-TOH-sus) is also called SLE and is the type that most people mean when they talk about lupus. It’s the most serious form of lupus. SLE can affect the skin, joints, tendons, and other body organs like the brain, heart, lungs, and kidneys.
- Skin (or cutaneous) lupus: is a skin disease that causes a rash on the face, neck, scalp, and ears. There are two types of cutaneous lupus: discoid (say: DIS-koyd) erythematosus (DLE), which can cause scarring; and subacute cutaneous (say: sub-uh-KYOOT kyu-TAY-nee-us) lupus erythematosus (SCLE), which doesn’t cause scars. Skin lupus is a much rarer form of lupus than SLE, and it doesn’t affect other organs the way SLE can.
- Drug-induced lupus is caused by a reaction to some kinds of medicines. Drug-induced lupus affects the body in many of the same ways that SLE does. Once a person stops taking the medication, the symptoms often go away.
What Causes Lupus?
No one really knows what causes lupus, but it isn’t contagious, which means you can’t catch it from someone who has it. Scientists think that some people may be more likely to get it because of things they can’t control, like:
- being a girl (girls and women get lupus much more often than boys and men)
- being a certain race (African-, Asian-, Latin-, and Native-American people are more likely to get lupus than white people)
- having a gene or genes that makes you more likely to get lupus (about 10% of people with lupus have a family member with the disease)
Sometimes, intense stress or an infection can be the trigger, but neither one actually causes the illness. But if a person’s genes make him or her more likely to get lupus, extreme stress or an infection may cause the disease to first show up.
How Is Lupus Diagnosed?
If a doctor thinks someone might have lupus, he or she may send the person to a pediatric rheumatologist (say: roo-muh-TOL-oh-jist). Rheumatologists are doctors who have special training in diagnosing and treating autoimmune diseases in kids. (Autoimmune diseases are sometimes referred to as rheumatic diseases, which is where “rheumatologist” comes from.)
A rheumatologist will talk to the kid and his or her parents and look for any symptoms of lupus. Here are some common symptoms of lupus:
- weight loss
- loss of appetite
- painful joints
- muscle aches
- swollen glands
- hair loss
- abdominal pain
- sensitivity to the sun
- mouth sores
The doctor will also run some tests on the kid’s blood to look for certain antibodies and other things that may be signs of lupus.
How Is Lupus Treated?
Once a kid has been diagnosed with lupus, the pediatric rheumatologist will decide on a treatment plan. The treatment depends on how severe the lupus is and what parts of the body are affected. Almost all kids with SLE take some kind of medicine to control their lupus. Kids whose joints hurt often take acetaminophen (like Tylenol) or ibuprofen (like Advil).
Other kids take antimalarial (say: an-ty-muh-LAIR-ee-ul) drugs to help treat skin rashes and joint pain. (Antimalarial drugs are usually used to treat the disease malaria, but some have also been found to work against lupus.)
Some kids take steroids (not the kind some bodybuilders and athletes take), which are medications that help some of the symptoms of lupus. If lupus affects a kid’s kidneys or other organs, there are immunosuppressive (say: im-yeh-no-suh-PRES-iv) drugs that may be used. These are strong drugs that help hold back the activity of the immune system.
Living With Lupus
Besides medicines, a big part of treating lupus may involve changes in a kid’s lifestyle. Kids with lupus can learn to manage the disease so it gets in the way as little as possible.
Sometimes, a kid will work with a health care team, which may include people like a rheumatologist, a nephrologist (a doctor who specializes in kidney problems), a nurse practitioner, a social worker, a physical therapist, and a mental health specialist. This team can create a special treatment plan based on the kid’s needs.
The kid, parents, and the team work together to help control the symptoms of lupus and prevent flares. A flare is a period of time when the disease gets worse. This can make a kid feel more tired, sick, feverish, and achy than usual, and it can also harm important body organs.
For a lot of kids with lupus, paying close attention to what they do every day can help prevent flares. A kid with lupus needs to get enough rest, avoid becoming too busy or stressed out, and always take medications when her or she is supposed to.
Eating well and exercising regularly also can help a person avoid a flare and it’s good advice for any kid.
When it comes to staying healthy, sometimes what kids with lupus don’t do can be just as important as what they do. Rheumatologists recommend that people with lupus not spend time in the sun unless they wear lots of sunscreen and protective clothing because ultraviolet rays may bring on a flare. Smoking, drinking, and drugs are also really bad ideas for kids with lupus, as they are for anyone.
With the right medication and healthy habits, kids with lupus can go to school, take part in activities, play sports, and do stuff with their friends.
If you have a friend or classmate who has lupus, he or she may not feel well sometimes or may miss some days of school. It’s great if you can be understanding. That should be easier for you now that you know a little more about lupus!
Reviewed by: AnneMarie C. Brescia, MD
Date reviewed: July 2014